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Crohn's Disease Forum » Surgery » Need Advice/Help preparing for Sigmoid Colostomy


02-16-2017, 04:18 AM   #1
LilMissCrohnie
 
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Need Advice/Help preparing for Sigmoid Colostomy

Hi. Im 19 and a student. My mother has Crohn's Disease and was diagnosed at the age of 15/16, no other history of Crohn's is in my family.

I was diagnosed with Crohn's Disease in 2014 when I was 16 and suffered from severe anal fissures. I was diagnosed with Iritis (Inflammation of the Iris) in 2013 and was treated for 8 months on heavy doses of steroids (eye drops and oral). For 4 months my eye specialist failed to treat me, it wasn't until around the 4 month mark that he stood up and said he didn't know what to do. He then sent me to a specialist in Brisbane (Dr. Conrad), she managed to treat my Iritis and slowly get me off of the steroids within 4 months. Once I had no signs of Iritis, and was completely off of steroids, I began to fall into a very heavy depression (I had depression for 4 years previous to this). I eventually became suicidal and reached out for help immediately. During this time, I began experiencing extremely severe abdominal pains, diarrhoea, weight loss and fevers. As my mum has Crohn's, she suggested we saw her specialist, Dr Andrew McIntyre. After my first consultation, I was booked for a colonoscopy and endoscopy. After my procedure, my doctor confirmed that I had Crohn's Disease effecting my large colon and rectum/anus. I was immediately prescribed Sulfasalazine. After 3-4 months on this with no sign of treatment I was put on Azathioprine. After another 3 months I was changed to Mesalazine (Salofalk) and continued on Azathioprine. I was then accepted into uni and had to move to Brisbane, my condition was extremely bad, I was still losing weight, I was not digesting any food and had severe abdominal pain. The Azathioprine was giving me Bladder Infections/UTI's every 2 weeks, severe nausea/vomitting and gave me severe migraines. Dr McIntyre was determined to get me some type of treatment before I moved so I was suggested Humira. I was 18 yet so I was given a 3 hour infusion of Remicade (Infleximab). I immediately felt a difference within 3 days, my fatigue and general well-being was improved dramatically, my pain and diarrhoea had decreased and I could actually function normally. A month later I turned 18 and had moved to Brisbane, Dr McIntyre arranged Humira for me and I was having fortnightly injections. I was not taking any form of immune-suppressant. For a year I was doing great. I started uni and completed 3 trimesters, I had a part-time job and meet a wonderful partner which whom I moved in with. In May 2016 I went to the emergency hospital at Mater Public Hospital Brisbane with severe bleeding, diarrhoea and abdominal pain, I had lost 10kgs in a week and couldn't walk. After a week in hospital I was registered with the Young Adult Gastro team at the Mater Hospital. I had a colonscopy and a endoscopy, showing sever Crohn's Disease. My Humira was still reacting to my body well but I wasn't showing any sign of treatment. I was then prescribed mesalazine (Pentasa) and Mercaptopurine (Puri-Nethol). After 3 months and no sign of treatment, and complications with Mercaptopurine (nausea/vomitting) I was then taken off both Pentasa. At this point I was on Humira and Puri-Nethol for another 3 months. I was in and out of Hospital every 2 weeks, I had to defer from University and after 2 months I had to leave work after passing out numerous times. My partner became very distant and I was getting very stressed and axnious over the realtionship, I had no support from him or my friends. I went to my next appointment with determination for some help, I demanded something to be done. I was given a Iron infusion, an ultra sound to check my inflammation in my intestines. Following this I had a discussion with my doctors about my medication options. In Australia, I was almost on the last avaliable medication. I was given the option of experimental drugs, but was told I'd need to be off all medication for 8 weeks and then had a 50% chance of getting a placebo drug. I was so ill that it wasn't a risk I could take. We decided to increase my Humira to weekly and change my immune-suppressant to Thioguanine (Lanvis). I decided to leave my partner and move back home with my parents. I spent 4 months living with my parents to heal and relax, I had a pathology test during this and it came back with normal inflammation markers. This was the first time I had ever received this result. After this news I had goal to move back to Brisbane and start uni again. I moved back on the 20th Jan, and have been suffering from stress and anxiety quite badly. My symptoms have come back, worsen anal fissures, bleeding, discomfort and increase pain, I went back to the hospital since and my doctors arranged an ultra sound, MRI and Flexi Sig for this month (Feb). I had my Flexi Sig on Tuesday the 14th and after I was told I had no medication options but would need a temporary Sigmoid Colostomy. This was hard to hear. I'm looking for others that have had tempory Sigmoid Colostomies and what their stories and advice are/is.

Thank you,
LilMissCrohnie
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